Seb's diagnosis / rx update

Discussion in 'General Parenting' started by EB67, May 21, 2007.

  1. EB67

    EB67 New Member

    Deep breath. Seb and I saw the neurologist today and he revised his diagnosis and prescribed new medication.

    He added Sensory Integration Disorder to the ADHD-- and the dreaded suggestion of bi-polar. He said that he could not diagnose him as bi-polar at present but it has been on his mind. He wants to see if Seb's issues with mood regulation change and if they worsen on stimulant medication. If they do worsen, he prescribed Depakote (which husband is spitting tacks over at the moment and says he absoultely will not allow it. Another subject altogether).

    I feel sad today. Seb is such an effervescent, bright kid with a magnetic personality and a beautiful, contagious smile and laugh. But then there is his dark side.

    I worry about his sadness, his depression. I worry about his explosive reactions in the face of the usual suspect triggers. I worry that he'll be like my mother-- a desperately sad woman who is bi-polar and narscisstic and suicidal.

    When talking to the neurologist I was choking back the tears at the suggestion of bi-polar. It has been the one thing that I have been most afraid of.

    So I will try to give Seb fish oil-- though given his issue with swallowing and ingesting will be perhaps impossible to do. If I can get him to take the fish oil I will have him take that and only that for 3 weeks and then introduce Daytrana. Seb was excited about the idea of the patch as opposed to the Adderall capsules he battled-- I hope he tolerates Daytrana well. And I hope it works.

    Somebody please tell me that a bi-polar diagnosis is not a death sentence.
     
  2. DammitJanet

    DammitJanet Well-Known Member Staff Member

    Bipolar isnt a death sentence. There are a ton of people who are geniuses who were bipolar. They made this world a better place to live because of their "differences". Google it.
     
  3. totoro

    totoro Mom? What's a GFG?

    It is not a death sentence... My Mom commited suicide she was BiPolar (BP) but she never recieved the help she needed/no medications... I have un-diagnosis'd mood-disorder... almost everyone in my family and some in my husband family have BiPolar (BP) or some form of a Mood Disorder.

    So when I heard my difficult child 1 was BiPolar (BP) it broke my heart also... and now looking at my difficult child 2 with her issues i am OK with it all. It has only been about 9 months since we started the evaluations. But issues since they were babies.

    I am honestly OK with her diagnosis. I have fears for their futures and hate what they go through, the medications etc. But the actual words BiPolar (BP) no longer give me fear. It is our reality and we need to deal with it.

    I have ups and downs so does husband so I think this allows us to be a bit more empathetic with our daughters, while it is not easy by any means, I don't get so upset with her now that I understand so much more what is going on in her little mind...

    If this is your difficult child's diagnosis, take time and research, read up on it. There are some great books out there, covering all sides of this issue!!! The bipolar child website has a great list of books. As well as cabf.org
    Hang in there and let yourself cry if you need to you will be OK with this. The shock fades and the warrior mom takes over... I hope husband gets on board, because if your difficult child is indeed BiPolar (BP) medications are most likely a must!!!
    Hugs

    by the way- we use Fish Oil for both girls, have for months... I really don't see anything good or bad with it, but I figure it can't hurt. We started with that prior to medications.
     
  4. Marguerite

    Marguerite Active Member

    You can always try opening a fish oil capsule and giving it to him on a spoon. It would depend on the taste, though.

    I'm not surprised at the Sensory Integration Disorder (SID), although I don't see it as a stand-alone diagnosis. You can get it in a number of other conditions.

    I still think the best thing is to just cope with Seb on a day to day basis, with whatever he dishes out and whatever triggers him guiding you as to how to help him stay calm and in control of himself. The BiPolar (BP) label is still only a thought, not a reality. With family history it would HAVE to be on the specialist's mind and it does give you some sense of direction as well as what Seb is trying to deal with. Sensory Integration Disorder (SID) alone would be enough, in terms of things setting him off.

    If you can help Seb learn to deal with sensory stimuli at a manageable level, he will learn to cope to a certain extent. You can also desensitize/resensitize a child, by working slowly and carefully through difficult stimuli at a manageable level. Occupational Therapy can help there.

    How is husband taking it?

    Marg
     
  5. SRL

    SRL Active Member

    Were you able to mention that you had reviewed the criteria for Asperger's and felt like it rang a bell with you? If so, how did he respond?

    No matter what the diagnosis is, it's *always* hard to hear.
     
  6. timer lady

    timer lady Queen of Hearts

    I try to remember that a diagnosis is a road map of sorts. It points me in the right direction for treatment. Many times there are detours on the treatment plan however you have a starting point.

    You know, deep in your heart, that bipolar isn't a death sentence. It will be a different way of life; however not a death sentence.

    Your difficult child is still your difficult child - doesn't matter the diagnosis.

    Time to start planning - looking for school accomodations as needed; educating yourself in the sensory problems, etc. The more you know, the better you can help yourself & your difficult child.
     
  7. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    With all due respect to the neurologist, he isn't a psychiatrist. Unfortunately, doctors are very specialized these days. I have bipolar and no way in hay would I trust a Neurologist to diagnose a psychiatric problem. With the ADHD/Sensory Integration Disorder (SID) diagnosis, I'd take Seb to a neuropsychologist (different than neurologist) and look into Aspergers. I have bipolar and a son with a Pervasive Developmental Disorder (PDD). in my opinion he sounds more like an Aspie than bipolar, or he could be both--either way every disorder has to be addressed in a seperate way. Bipolar requires medications. Aspergers requires interventions, not medications, and stims can work against it. My son went ballistic on stims and Prozac so he got a bipolar diagnosis too, but he doesn't have it. I suggest leaving no stone unturned. I know that the Neurologists I took Lucas to see did EEGs and neurological tests, but wouldn't venture a guess on a diagnosis. They referred us to a neuropsychologist. in my opinion, for a BiPolar (BP) diagnosis, which is serious and will require heavy medications, I'd go to both a Child Psychiatrist AND a neuropsychologist before I'd go there. My son was on Ritalin, Concerta, Adderrall (scary), Prozac, Zyprexa, Ripserdal (scary reaction), Depakote, Trileptal, Lithium and Seroquel (more, but I can't think of them all) because he was diagnosed wrongly with ADHD and bipolar. He has neither. In retrospect I'd do more research and learn more myself and definitely go with more than one opinion before I either accepted a diagnosis or put my son on medication. He is 14 now and still way overweight due to all the weight gaining medications. medications are a Godsend if he really DOES have bipolar, but I highly recommend getting a few opinions before you accept the label. It's not the end of the world, but Seb has symptoms of other disorders too. His Sensory Integration Disorder (SID) could be addressed at school. Lucas had very severe Sensory Integration Disorder (SID). He's much better now. Hugs and good luck with whatever you decide to do. I linked you to an online test which points to various Pervasive Developmental Disorder (PDD)'s, including Aspergers (would be mild Pervasive Developmental Disorder (PDD)). You may want to see how Seb comes out on the scale. It's not official, but, when answered honestly, it's really a good predictor.
    http://www.childbrain.com/pddassess.html
     
  8. wethreepeeps

    wethreepeeps New Member

    Nordic Naturals makes a chewable fish oil and an emulsion form in a pudding. Also, the child sized ones are usually really tiny gel caps, one of those forms might be an option for you.
     
  9. SuzyfromTexas

    SuzyfromTexas New Member

    Regarding the fish oil, my son takes Coromega which is a pudding like substance that is spread on a spoon. The flavor is orange chocolate (not great) but it can be mixed with pudding or yogurt. My son takes it straight but washes it down with a drink.
     
  10. EB67

    EB67 New Member

     
  11. EB67

    EB67 New Member

     
  12. EB67

    EB67 New Member

    >>If you can help Seb learn to deal with sensory stimuli at a manageable level, he will learn to cope to a certain extent. You can also desensitize/resensitize a child, by working slowly and carefully through difficult stimuli at a manageable level. Occupational Therapy can help there.

    Seb gets Occupational Therapist (OT) at school. Our district does not recognize Sensory Integration Disorder (SID) and will not provide Occupational Therapist (OT) for anything that does not directly impact his learning. We may go private for this. Ka-ching, ka-ching. Having problems is expensive.

    >>How is husband taking it?

    Hard to say as he's been away on business for several days. When I told him on the phone he just listened, calmly. Usually he has a fast knee jerk reaction but it seems as if he is taking this seriously. Though when I mentioned the Depakote he said: "No $&*@ing way".
     
  13. EB67

    EB67 New Member

    You may want to see how Seb comes out on the scale. It's not official, but, when answered honestly, it's really a good predictor.
    http://www.childbrain.com/pddassess.html [/quote]

    Thanks-- I did that one last week. Seb scored 58. I may try to answer again, fresh and see what it says.

    You make a very good point about the imporrtance of a neuropsychologist for the diagnosis. In all fairness, the behavioral neuro said that BiPolar (BP) is not his area of expertise. I will set out today to find the right MD for the issue du jour.

    The scary part in all of this is the difficulty of a correct diagnosis and the margin for error if you medicate for the wrong disorder. I suppose though that testing Seb's reaction to the ritalin patch will help clarify if he is potentially BiPolar (BP). If he freaks out, one more point for BiPolar (BP). If the medications work for him, one point for garden variety ADHD / Sensory Integration Disorder (SID).
     
  14. Marguerite

    Marguerite Active Member

    A reaction/no reaction to stims isn't a guarantee of BiPolar (BP). difficult child 1 rebounds badly on ritalin but not on dex. A friend of ours rebounds on dex but not ritalin.

    difficult child 1 can take antidepressants and does well. difficult child 3 (and I) can't.

    Drug reactions can happen for all sorts of reasons.

    And don't worry about heredity - that die is cast. Besides, environment is a HUGE factor, and a big part of today's environment is a much better understanding and management. You are on the alert to it and with your vigilance, I can see a lot more consideration and precaution being taken.

    The Occupational Therapist (OT) at the school may be able to help with the Sensory Integration Disorder (SID). I would talk to the school about the implications of this, put it in the IEP. But first you have to find out how it specifically impacts his schooling. All I could help you with here is a list of how difficult child 1 & difficult child 3 were affected by this at school. easy child 2/difficult child 2 also has Sensory Integration Disorder (SID) issues but found her own way of handling it at school.

    See if you can make a list of his sensory issues, overall. Have you had a chance to talk to your younger son's speech therapist about Seb's swallowing issues? If it's Sensory Integration Disorder (SID), this could put it equally with the Occupational Therapist (OT).

    With food and textures, we didn't push difficult child 3 too hard but we DO make him at least taste new foods, so he doesn't narrow his food choices too much. If the food has a creamy texture (which he hates) we try to find a way to let him taste it without experiencing the texture too much - maybe with another food he knows. In this way he has accepted tartare sauce and mayonnaise.

    A thought - how is he with dry food? I know your son's food issues are almost the opposite of difficult child 3's - your son likes things creamy because it makes them easier to swallow. Well, my husband has swallowing issues too which he puts down to a dry mouth. He won't eat shortbread, for example, because it's so dry and crumbly. He's much worse than he used to be, he really prefers his food much moister than he used to. Is this a possibility for your difficult child? In which case, there could be a mild medical reason for it - some medications cause a dry mouth, for example. For husband, we just make sure he has a drink of something handy (milk is good) as well as keeping the food moist.

    The Pervasive Developmental Disorder (PDD) score of 58 - easy child 2/difficult child 2 currently scores about the same. It's been very difficult to assess her because she masks it so well and she IS 20 now, she's compensated a great deal. Her doctor says she's not Aspie because she makes good eye contact, but she only does this with people she knows (like the doctor) - and difficult child 3 also makes good eye contact. It really can be very arbitrary, with specialists. Also, the smarter the kid, the harder it is to pinpoint a diagnosis. For us, we have a personal working hypothetical diagnosis of Asperger's for easy child 2/difficult child 2, because it makes it easier for us to handle her problems (and tantrums, and meltdowns, and panic attacks).

    If you can, print the sheets each time you do the Pervasive Developmental Disorder (PDD) test for Seb. Any other similar tests - print them out. It can give you a running record of his progress in all those small areas, too. Plus, if in doubt - look at the info on how to answer each question. Sometimes we err on the side of wanting to get a higher score, or wanting the child to score as normal. The guideline keeps it as impartial as possible. It might be a useful tool to help husband understand, too (but use your own judgement there). If husband does the test for difficult child, make sure he confirms his answers with the answering guidelines. It could be an awakening for him, although with a close-to-normal Pervasive Developmental Disorder (PDD) score like this it could encourage his denial. As I said, only you can judge this option.

    Marg
     
  15. Steely

    Steely Active Member

    BiPolar (BP) is not a death sentence.....if anything, like Linda said it is a road map.

    When the doctors finally decided that it was indeed BiPolar (BP), my son was 12, and had been through hell and back with medications, suspensions, hospitalizations, etc. I would do anything to go back to when he was 7 and have someone tell me what I was dealing with - instead they said it was too early to tell. The day he was finally diagnosed as BiPolar (BP), the light seemed to shine, because finally we could find the approporiate medications, and finally I could apply all of the information I had learned about BiPolar (BP) to his situation and help him appropriately.

    I know, in terms of my difficult children future, and yours, BiPolar (BP) is a bit of an ominous label - but I would rather know what I am dealing with, so the right tools can be implemented, than be caught in the dark. Maybe have your husband read up on this disease, so if your son really has BiPolar (BP), your husband will not be resistant to medications. This is an actual chemical brain disorder and just like diabetes, he needs medication to make his little mind function better.

    Hang in there.......and do not project too far into the future. The high suicide rate in BiPolar (BP) adults is largely attributed to non medicated individuals who are not in therapy or addressing the disease. We are all on this board because we are invested in making our kids life better through knowledge - and that is exactly what you will do if your son has BiPolar (BP).
     
  16. EB67

    EB67 New Member

    >>The Occupational Therapist (OT) at the school may be able to help with the Sensory Integration Disorder (SID). I would talk to the school about the implications of this, put it in the IEP. But first you have to find out how it specifically impacts his schooling. All I could help you with here is a list of how difficult child 1 & difficult child 3 were affected by this at school.

    I'd be very interested to see your list. I actually drafted a list of my own. It will be hard for me to convince the district that certain sensory issues are impacting his learning (like his extreme reactions to "bad air"-- an olfactory situation perceived by Seb and Seb alone)

    See if you can make a list of his sensory issues, overall. Have you had a chance to talk to your younger son's speech therapist about Seb's swallowing issues? If it's Sensory Integration Disorder (SID), this could put it equally with the Occupational Therapist (OT).

    >>A thought - how is he with dry food? I know your son's food issues are almost the opposite of difficult child 3's - your son likes things creamy because it makes them easier to swallow.

    Seb has no issues when it comes to actual food. No problem with textures of any kind. Or strong flavors for that matter. This is a kid whose favorite foods include sea urchin sashimi and seaweed. He'll order the grilled octopus and broccoli rabe. The people in the Chinese restaurant love him because they've never met an American kid who orders the jellyfish and pig knuckle. Yesterday after the neuro we went out ona dinner date and feasted on all kind of strange foods.

    But medicine? That's another story. Anything that's medicine in any form (pill, liquid, capsule, meltaway) provokes KABOOM!!!!. Or KABOOOM-VOMIT. When he was a baby I would have to virtually put him in a half nelson to take antibiotics or baby Tylenol. Now it's no different. But if I force him to take ANY medication; he'll barf on me. I think his swallowing issues are really medication anxiety issues.


    Thanks for the suggestions...
     
Loading...